To think emulsifiers should be banned or at least reduced

[MumofCrohnie]

My daughter became seriously ill aged 10 with cramps, diarrhea, weight loss. Within a month or two she could barely walk 100 metres without getting a stitch, was breathless, routinely ran high temperatures and began vomiting randomly. She would wake at night crying in pain from her legs aching or her back hurting. She stopped growing and her skin went grey.

After 2 GP trips, 2 A and E visits within a month, and an emergency gastro appointment she was finally diagnosed with severe Crohn's disease. This disease was once virtually unknown in children but since the 1970s has grown enormously in children. It is now not particularly rare in children and increasingly common in adolescents and young adults. It is incurable and my daughter is now on 4 separate medications daily, quite probably for life. She has a 70 percent chance of in the future needing operations to remove sections of intestine, risks strictures, blockages, and fistulas in her intestines. She will probably go through early menopause.

There is increasing evidence that the Western diet contributes to the development of Crohn's in genetically susceptible people (her great grandma developed Crohn's in her 70s, back in the 1980s). Specifically, it seems that emulsifiers, carageenans, and maltodextrins may be a significant factor in developing Crohn's. In animal models there is pretty good evidence for emulsifiers. Emulsifiers bind fat and liquid and are used in bread, ice cream, sauces, baked goods etc almost ubiquitously in the UK. They are considered "safe", despite animal evidence showing they probably aren't. Since emulsifiers were added to prepared foods, Crohn's levels have increased hugely. This is a serious disease and it ruins lives.

AIBU to say that British food companies should be more wary of emulsifiers and label them in their food, provide emulsifier free alternatives and label items emulsifier free for families with an IBD history? Just like they make gluten free, dairy free and vegan foods?

Thanks for this OP, I had no idea. It's such a minefield. Sorry to hear about your dd.

As one of the increasing number of people suffering from autoimmune conditions and allergies, the chemical soup we are eating and using is an ever growing concern. I highly suspect future generations may use this time as evidence as what not to do with the food supply. Changes need to be based on hard evidence though and that makes things challenging.

Actually you are right, I would like a ban on any specific emulsifiers and gums that might be proven to trigger IBD in susceptible individuals. Safe ones could still be used (like natural emulsifiers, soya lecithins)

The reason is that once triggered, you have Crohn's or ulcerative colitis for life. Children as young as toddlers are becoming lifelong medical patients. It's not reversible.

Families with coeliac in are at higher risk (we have 5 coeliacs in this generation; dd got the short straw and got Crohn's) as both are autoimmune bowel diseases so I am surprised that you think the way you do.

We were desperately hoping dd was coeliac. A life of reading packages or using 'free from' and she'd be fine. With Crohn's we have a lifetime of reading packages to try to find non highlighted additives that are in 55 percent of UK foods, and chances are she will still have multiple hospitalisations and operations and quite possibly a stoma.

If the specific emulsifiers, carageenans and gums shown to be linked were banned, my child and hundreds of others would quite possibly not now be lifelong medical patients.

(post above to clumpingbamboo)

Specifically - you don't know you have Crohn's until you do. So reading packets comes too late if you don't know about links to food additives that are pretty ubiquitous in our Western diet. By the time you find out, it's too late.

It's not a competition about whether coeliac disease or Crohn's disease is worse (FWIW, yes, I would much rather have coeliac than Crohn's). It's about you popping up with some very dodgy science to demand bans that would impact on other people's quality of life, many of them people who would be your natural allies if instead you were asking for something reasonable.

It's not dodgy science!
It's medical journals such as Gastroenterology, BMJ, it's university teaching hospitals.

Can you link to any similar quality of research to show these additives are in fact safe?

What do you think would be reasonable then, given that we don't know whose child is susceptible to Crohn's or colitis until it's triggered? And once triggered it's not curable?

I think it's good to raise these issues. People need to be informed. You could contact your MP or maybe Woman's Hour or other programmes where they might discuss this which gives it publicity.

Then campaign for more research, better labelling/highlighting, public education if you can back it up, so people can make their own choice about whether to give their children foods with these ingredients. Demanding a ban is something else altogether.

Unfortunately the only way to avoid all the nasties is to home make all food including bread etc. Us humans are so lazy that even if we knew we wouldn’t want to change, look at climate change as an example.

As if me "demanding a ban" is going to make it happen!

It's virtually impossible to avoid giving your children foods with these ingredients, unless you bake your own bread and cook every single item from scratch (which we do now!)

They are in breads, cakes, biscuits, mayonnaise, other sauces, cottage cheese, icecream, gravy, margarine, wraps, "convenience foods" such as nuggets, etc. They are in the substitute foods you try when your child first gets ill and you reduce dairy and try vegan dairy alternatives such as nut milks. They are, as you say, in alternatives to wheat products that you try when you think maybe it's coeliac like her aunt and cousins. They are in sweets and chewing gum.

I think the public should have much better awareness, yes, and I guess I hoped this post might help. I am not expecting to wake up tomorrow and find that all emulsifiers are banned on the strength of this post!

But just maybe a few people with kids and autoimmune diseases in the family will change the way they eat, and avoid what has happened to us and many other families.

Carrageenan is evil, drinking flavoured soya milks when I was vegan gave me bad stomach pains and an ache in my throat like I’d got a large vitamin tablet stuck sideways in my foodpipe. I’ve long since gone to eating a real food animal based diet, including fruit and veg, as eating highly processed, imported, over packaged factory food is worse all round.

Just remembered about a year ago I bought some gluten free tiger bread and that gave me the same cramps that carrageenan does. Other GF breads I’m fine with, but seldom eat... I’d much rather have a simple jacket potato than a sandwich.

I think this is why medics all recommend whole food diets.
It’s the dose too - a little of ultra high processed food is ok but if that it your main food source then it will make you unwell in other ways.
It’s not about banning these substances but reducing them in our diets by eating more fruit and veg.
Easier said that done but processed food is a risk factor for diabetes and various other illnesses anyway.

What is carageenan labelled as on foods?

Interesting info, OP. I thought I was pretty well up on food issues, but I'd never heard that emulsifiers could be a problem. I have ongoing, unidentified (though fairly mild) stomach problems. Most of my possible trigger foods probably do commonly contain emulsifiers, so that’s worth monitoring.

Crohn’s sufferer here (20+ years experience).

It’s a very individual disease. For me processed food is kinder to my innards. Fresh healthy food has me doubled over. So a ban on emulsifiers would leave me with only dust to eat.

There is no one size fits all diet for crohns, it’s why it’s so difficult to diagnose and treat.

I feel for your DD as it really is a horrid disease to have, but a blanket ban on foodstuffs because her digestive tract can’t handle them isn’t the answer. As I’ve got older the foods I can tolerate have changed. Some things I’ve been able to reintroduce for a while then exclude again.

It’s a minefield.

@DogandMog

Carrageenan is evil, drinking flavoured soya milks when I was vegan gave me bad stomach pains and an ache in my throat like I’d got a large vitamin tablet stuck sideways in my foodpipe. I’ve long since gone to eating a real food animal based diet, including fruit and veg, as eating highly processed, imported, over packaged factory food is worse all round.

Just remembered about a year ago I bought some gluten free tiger bread and that gave me the same cramps that carrageenan does. Other GF breads I’m fine with, but seldom eat... I’d much rather have a simple jacket potato than a sandwich.

You do know that it’s a plant derived product don’t you?

@MumofCrohnie

Specifically - you don't know you have Crohn's until you do. So reading packets comes too late if you don't know about links to food additives that are pretty ubiquitous in our Western diet. By the time you find out, it's too late.

You’re making some hefty assumptions here. It’s not the foods that cause the diseases. They are autoimmune diseases that are always there - when you eat certain foods you will have a reaction. Most people don’t have an autoimmune disease. The people I know who do, or who have food allergies, are very good at checking ingredients to eliminate allergens.

Op, thanks very much for this post. I knew nothing about emulsifiers but will look into them now. Unfortunately, as I’m sure you know, its going to take a while to omit these in food manufacturing. I’d settle for labelling for now tbh.

It’s amazing the amount of ingredients that go into everyday things like bread. The list of ingredients can be so long. I try to them.

@MumofCrohnie

Actually you are right, I would like a ban on any specific emulsifiers and gums that might be proven to trigger IBD in susceptible individuals. Safe ones could still be used (like natural emulsifiers, soya lecithins)

The reason is that once triggered, you have Crohn's or ulcerative colitis for life. Children as young as toddlers are becoming lifelong medical patients. It's not reversible.

Families with coeliac in are at higher risk (we have 5 coeliacs in this generation; dd got the short straw and got Crohn's) as both are autoimmune bowel diseases so I am surprised that you think the way you do.

We were desperately hoping dd was coeliac. A life of reading packages or using 'free from' and she'd be fine. With Crohn's we have a lifetime of reading packages to try to find non highlighted additives that are in 55 percent of UK foods, and chances are she will still have multiple hospitalisations and operations and quite possibly a stoma.

If the specific emulsifiers, carageenans and gums shown to be linked were banned, my child and hundreds of others would quite possibly not now be lifelong medical patients.

www.crohnscolitisfoundation.org/what-is-crohns-disease/causes

The Crohns - Colitis foundation state that diet does not cause either disease, I’m assuming that a foundation set up specifically to research these diseases would be experts on the causes?

Hi OP. Sorry to hear about your daughters diagnosis. I have Crohns too. Have had it since my early 20s and have been lucky to have lengthy periods of remission. I manage it now with self administered injections every 12 weeks and a more whole food, plant based diet.

I can't believe the difference diet has made. I wish someone had told me before I had to work it out for myself. I was even told by medical professionals that diet didn't matter 🤦🏼‍♀️ I know a high fibre diet isn't appropriate for people who have very active disease/strictures but I was told low fibre diet best for Crohns and not advised how to reintroduce fibre and the importance of it.

My current gastro is definitely more knowledgeable. Advised me strongly to breastfeed my children if I could. This is a protective factor for IBD.

I had a son 4 years ago and I try my best for him as I know he is genetically predisposed to IBD. So breastfed, making his food from scratch as much as I can, lots of fruit and veg. I bought a breadmaker so we only have homemade bread. I do allow him to have choc and treats but try to limit these.

I find Instagram accounts so helpful. theguthealthdoctor and theguthealthmd -will bulsiewicz who is a GI. He wrote fiber fuelled. I would definitely recommend that you read his book. It advocates a whole food plant based diet. I also follow other people who have IBD and who have great success with WFPB diet too.

Please don't beat yourself up about your daughters diagnosis. She is lucky to have you as her advocate now.

@MumofCrohnie

My daughter became seriously ill aged 10 with cramps, diarrhea, weight loss. Within a month or two she could barely walk 100 metres without getting a stitch, was breathless, routinely ran high temperatures and began vomiting randomly. She would wake at night crying in pain from her legs aching or her back hurting. She stopped growing and her skin went grey.

After 2 GP trips, 2 A and E visits within a month, and an emergency gastro appointment she was finally diagnosed with severe Crohn's disease. This disease was once virtually unknown in children but since the 1970s has grown enormously in children. It is now not particularly rare in children and increasingly common in adolescents and young adults. It is incurable and my daughter is now on 4 separate medications daily, quite probably for life. She has a 70 percent chance of in the future needing operations to remove sections of intestine, risks strictures, blockages, and fistulas in her intestines. She will probably go through early menopause.

There is increasing evidence that the Western diet contributes to the development of Crohn's in genetically susceptible people (her great grandma developed Crohn's in her 70s, back in the 1980s). Specifically, it seems that emulsifiers, carageenans, and maltodextrins may be a significant factor in developing Crohn's. In animal models there is pretty good evidence for emulsifiers. Emulsifiers bind fat and liquid and are used in bread, ice cream, sauces, baked goods etc almost ubiquitously in the UK. They are considered "safe", despite animal evidence showing they probably aren't. Since emulsifiers were added to prepared foods, Crohn's levels have increased hugely. This is a serious disease and it ruins lives.

AIBU to say that British food companies should be more wary of emulsifiers and label them in their food, provide emulsifier free alternatives and label items emulsifier free for families with an IBD history? Just like they make gluten free, dairy free and vegan foods?

I think you run the risk of developing many illnesses from eating processed food.

I think the trick is to try to prepare your own food, and only consume processed in a real, real pinch.

All these additives etc will only get worse as the manufacturers try to cut costs further.

@Soontobe60 Thank you for drawing everyone’s attention to the dangers of emulsifiers. I had not realised this.

I am so sorry your DC has been badly affected.

“ClumpingBambooIsALie

I was responding to your most recent mention of the question of bans, which was this: Rephrasing: not a ban then, only a ban on the dangerous emulsifiers, carageenans, gums? which is still calling for a ban. Your family's needs are not more important than other people's. Lots of people have to read labels.“

Your family’s needs are not more important than other people’s. Lots of people have to read labels

From this information it seems likely that people who do not yet realise the cause may also be affected by these emulsifiers.

Labelling does not at present seem to highlight these ingredients in bold as allergens. Perhaps that would be a start.